The Ryr-1 Foundation
Nonprofit profile at a glance
- EIN
- 471094057
- IRS 990 coverage
- 2016–2024
- Forms available
- Form 990 2024, Form 990-PF 2015
- Location
- Pittsburgh, PA, USA
- Phone
- 4122237236
- Rating
- 64
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Medical Research N.E.C.
Reported finances
- Revenue
- $681,990
- Expenses
- $384,333
- Assets
- $2,731,932
- Liabilities
- $25,105
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
14 people listed
Executive titles in this filing
- MICHAEL GOLDBERG (BOARD PRESIDENT)
- JENNIFER RYAN (BOARD VICE PRESIDENT AS OF MAY 2024)
- LINDSAY GOLDBERG (EXECUTIVE DIRECTOR AND PATIENT LIASION)
Highest reported compensation
- LINDSAY GOLDBERG (EXECUTIVE DIRECTOR AND PATIENT LIASION): $42,332 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The mission of the ryr-1 foundation is to support research leading to an effective treatment or a cure for ryr-1-related diseases through supporting research, providing medical professional education, and patient & family support and advocacy.
What it reported doing in 2024
Research workshop - the patient-led international research workshop is devoted exclusively to ryr-1-related diseases. This workshop provide a much-needed forum for the leading international ryr-1-rd experts and a group of affected individuals to share knowledge, exchange ideas, form collaborations, and develop new strategies for finding therapies. The workshop organizing committee includes a diverse group of researchers/clinicians in ryr-1-rd, members of the ryr-1 foundation's sab, and ryr-1-rd community representatives.
Operating model
- Revenue model
- Donor-supported. 85% of the money available for current operations came from contributions and gifts.
- Distribution model
- Grant intermediary. The nonprofit sent 64% of its reported program spending out as grants.
- Includes noncash contributions: Reported contributions include donated property or goods.
The verdict
SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.
Rating breakdown
- Financial Efficiency: 43
- Transparency & Controls: 75
- Accountability: 85
- Sustainability: 81
- Growth: 60
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 39.4%; rating input score 39
- Program expense ratio: 50.8%; rating input score 51
- Fundraising efficiency: $10.1 raised per $1 spent on fundraising; rating input score 38; 38th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: 0 of 8 controls in place; rating input score 0
- Claims monitoring procedures: Fail
- Requires narrative reports: Fail
- Conducts field audits: Fail
- May suspend future funding: Fail
- Requires financial reports: Fail
- Conducts site visits: Fail
- Requires grant agreements: Fail
- May require repayment: Fail
- Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 91.7%; rating input score 92; 24th percentile among comparable filings
- Governance controls: 6 of 8 controls in place; rating input score 75
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Fail
- CEO compensation review process: Pass
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Fail
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 43.6%; rating input score 90; 90th percentile among comparable filings
- Total-asset coverage ratio: 7.11; rating input score 89; 89th percentile among comparable filings
- Liabilities to assets ratio: 0.01; rating input score 69; 69th percentile among comparable filings
- Officer compensation ratio: 11%; rating input score 33; 33rd percentile among comparable filings
Growth
- Program expense growth: 2.3% per year; rating input score 100; 28th percentile among comparable filings
- Revenue growth: -2% per year; rating input score 0; 9th percentile among comparable filings
- Asset growth: 12.9% per year; rating input score 100; 67th percentile among comparable filings
Details
- Where the money goes: 39.4% of revenue deployed · 50.8% of spending went to programs
- Governance: 11 of 12 board members independent · 6 of 8 filing controls reported
- Programs: 4 filed program accomplishments · $195K in reported program spending
- Leadership: top reported pay $42K · 14 people listed
- Consistency: 32 of 32 current checks pass
- Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
- Filing history: 8 filing years from 2016 to 2024
- Contacts: How to reach this organization
- Money network: 9 filed money-flow records
- Related organizations: Filed and resolved organization relationships.
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- Moderate — Financial Efficiency: Mission deployment rate scored 39/100.
- Review — Financial Efficiency: Program expense ratio scored 51/100.
- High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
- Moderate — Financial Efficiency: Fundraising efficiency scored 38/100.
- Review — Accountability: Governance controls: 2 of 8 not reported.
- High — Growth: Revenue growth scored 0/100.
- Moderate — Sustainability: Officer compensation ratio scored 33/100.